If Sensory Processing Disorder had been in the DSM

Had Sensory Processing Disorder been in the Diagnostic and Statistical Manual my life would have changed when I left home to go to college. There, my first act of total independence was to go to the psychology building at the university and ask for help.

“Can you please tell me what’s wrong with me?” I asked the head of the department.

Growing up, I was “a problem.” I didn’t fall asleep or wake up like I was supposed to. Fancy clothes made me itch and complain. I did my best to avoid group activities. In school, I couldn’t keep my mind on what the teacher was saying. I hated recess. After lunch in the school cafeteria I had to fight to stay awake.

In high school I nearly failed gym class because I had a physical aversion to the gymnasium and the locker room. I did fairly well on assignments and tests but I was never a good student. I skipped classes to sit outside by myself.

When I was a kid I got the message that I was stupid, clumsy, lazy and stubborn. That if I just tried harder to get along with others, to be normal, I wouldn’t have these problems. It was hard not to believe my critics, because periodically I was smart, graceful, energetic and cooperative. I just never knew when or why my brain or my body would go jittery crazy and make me have to run away, throw a big fit or become completely inept.

At the University, a gang of psychology graduate students ran tests and analysis. They discovered I had an IQ of 125. But other than my own belief that “weird things happened to me” they had nothing to diagnose.

My problems were of my own making? I imagined them? I created them?

The tests proved I wasn’t stupid, but even with weekly psychological help, I ran into the same problems in college I had in high school. I started every semester with fervent determination. I wanted to help people! I wanted to be a doctor. I wanted to succeed. But for every hour I spent organizing, strategizing and studying I had one or more hours where all I could do was stare into space with my heart beating like I was running a marathon. I felt like a deer in the headlights of college. And as the semester wore on, my energy waned. The second half was always a downward slide. I couldn’t muster enough energy to go to class, I became depressed. By my fourth semester I gave up. Apparently, I didn’t want it badly enough?

I wondered, maybe I was just too much of a loner to make it in college. I had difficulty making and keeping friends. I couldn’t live in the chaos of a dorm. I couldn’t study in groups. When I forced myself to sit in the student union or the dining hall I became so anxious I had to leave. How could anyone else like me? I didn’t even like myself; I was weird.

It’s been thirty years since I dropped out of college.

In that time I sought help through emotional and spiritual counseling, self-help books, anti-anxiety medication, anti-depressants, alcohol and illegal drugs.

I look back and see that the results were always the same: some piece of the solution fit a piece of the problem. I was willing to try, hopeful that the solution would bring lasting benefits. Maybe they all did. Maybe I would have been completely dysfunctional without them. But nothing solved the problem. My body simply cannot tolerate situations and locations that normal people move in and out of without a problem.

The volume control on my world, physically and emotionally, is stuck on high.

I have had to significantly modify my life to make it bearable. I run twice as hard but only get half as far and I have never quit asking “what’s wrong with me?”

I learned a few months ago about Sensory Processing Disorder. I stumbled across a book during one of my regular forays to the library.

Now I wonder what my life could have been like if, three decades ago, the psychology department could have told me, “You have a Sensory Processing Disorder. It’s not your fault. We can help you.”

Since my discovery I have read and written and grieved and marveled.

I believe that every website, every discussion, every interview about Sensory Processing Disorder is an opportunity to answer the question for someone, somewhere, who has been wondering all their life, “what’s wrong with me?”


2 Replies to “If Sensory Processing Disorder had been in the DSM”

  1. i feel you. my sister turned 30 and said something is wrong with us get help. a month later i hit my first major meltdown and was in a crisis unit. 3 months ago i was diagnosed with spd i said i dont belive you and left. soon after i was having several anxiety-like attacks a day at my factor job and omw there. for the past two weeks iv been a hound for information about spd and i hope my OT eval in a month will help. i read something about dont be upset about the missed oppurtunities or the children we read about that get help early. but understand that a normal person could not stand a couple minutes in your body and, what you have accomplished without knowing is along the lines of amazing imense spectacular i couldnt think of what to say but its like whatever we have done without knowing even if its small is a huge feat.

  2. Are you my Doppleganger?! I dropped out of college with 1 semester left after being misdiagnosed with ADHD and prescribed a cocktail of stimulants and anti-anxiety medicine. (That’s how my search for help went.). I have experienced everything you mention in this post. I am frequently tired, I always feel raw, my memory and brain function is muddled and I know I’m capable of so much more- no sense of direction, weird sleep patterns, migraines, can’t go out of the house without it becoming a huge effort- I would LOVE to talk to you or email. now that I suspect I’m not broken, maybe I can begin to get my life together. I don’t knew if you will ever save the world, but you’ve certainly made it a better place. Thank you.

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